What is the usual length of time on steroids for PMR?

[Devonshire31]

I am new here. I was diagnosed with PMR last December but I am still taking 6mg of Prednisolone. Is this unusual?

[yorkieme]

Like you I entered this particular fight in December last year,I started on 15mg/day and then moved up to 60mg a day.Due to a lack of information from my G.P. and not having been seriously ill or needing the services of the NHS up to the age of 68 I hadn't a clue what Steroids were for,what they did,and the effect that they would have in all areas of my life,and I do mean all.

Thanks to those on this forum I am a little wiser and have now managed to dump some of the preconceived ideas that I had just a few months ago about how long it will take to get off steroids and what I can achieve whilst on them.

The answer to your question seems to be how long is a piece of string ? Those who helped and advised me with the answer will be along very soon to help you,listen to them and take their advice.

[PMRpro Ambassador]

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are links to articles about the same study about duration of corticosteroid management for PMR.

Unfortunately there is no answer to your question other than "As long as it takes." And that is usually longer than your doctor probably suggested. PMR comes when it wants and goes when it wants. It is a chronic autoimmune disorder and not something that you take a short course of medication for and it is cured. The pred cures nothing - it is a means of management of the symptoms while the disorder lasts to allow you a more comfortable quality of li

However - if you started last December and are at 6mg now, yes, that is very unusual! The median time from start to 5mg is 18 months so you are WAAAAAY ahead of the curve!

[tangocharlie in reply to PMRpro]

Most GPs start you on 15 for a few weeks then 12.5 then 10 then down by 1 a month so many people are forced down to 5 far too quickly, I was

[DorsetLady PMRGCAuk volunteer]

As PMRpro says unusual to get to 6mg so quickly.

Length - anything from 2 to 6 years - depends on lots of things.

Only thing I would say is - don’t be rushed - either by yourself or your medical team.

[Devonshire31 in reply to DorsetLady]

Thank you. I do feel I am being rushed to reduce my dosage of Prednisolone by my GP but I am really struggling with pain, especially today.

Devonshire31

[paulst955 in reply to Devonshire31]

That means you have reduced to fast and are in for a lot of pain. Up your dose till the pain goes away then do not reduce for at least a month below 10 mg it's best to go 1/2 mg at each reduction. I have been on the up and down yo-yo for 8 years. So you may be in for a long ride.

[DorsetLady PMRGCAuk volunteer in reply to Devonshire31]

As paulst955 says - stop, and take action advised.

You have reduced very quickly, looks as if it may be payback time. So time to get yourself back on an even keel.

Your aim with the tapering is to find the lowest dose that gives you relief ....you’ve passed that point, so time for remedial action.

You are not reducing relentlessly to zero - which is what many doctors seem to think.

[PMRpro Ambassador in reply to Devonshire31]

Then you have reduced too far - you aren't heading relentlessly for zero but looking for the lowest dose that manages the symptoms as well as the starting dose did. Go past that and the excess inflamamtion created each day will build up again until you are back at the start. You can reduce as fast as you like until you find that dose as long as it works and you don't feel worse at the end of a taper step than you did at the beginning.

You have overshot - you will just get worse unless you go back to what worked. Never less any doctor rush you to get lower for the sake of it - you need to be as well as you can manage.

This is not a limited disorder that goes away quickly - it is chronic and lasts years, not months.

[RevSmallwood]

Like you I am new here. I was amazed to find out here that the usual 18-24 month diagnosis is a complete guess and as said , PMR will go on till it stops, if ever, or come up with an effective treatment. If you are pain free on 6mg that's a good thing. At some point they will be encouraging you to reduce further.

[Arflane97G]

I started on 15mg last September, then reduced to 12.5, then 10 mg, then by 1 mg every month until I got to 5 mg, now reducing by 0.5 mg a month. The rheumatologist I first saw Told me that I would be off steroids in a year - that seems unlikely and was probably always unrealistic. Some tapers are more difficult than others but my rule - as advised by others here- is not to taper unless / until I feel as ‘good’ at the end of the month as I did at the beginning. Every one is different though - best wishes

[Pixix]

Hi...also diagnosed December 2019. I’ve managed, nit without some difficulty, to get from 16mg to 8mg and feel I’ve done really well in that time! My Doctor & I discuss dosage every month & he says ‘it’s not a race’ when I get too keen, & because my body always hates the first two weeks of dropping just one measly mg of dosage, sometimes accept it’s not going to work & take 1mg more for a little longer. I was offered a rheumy, but my doctor knows me well, & knows my other medical history & is kind & patient, so I prefer to stick with him (plus I’ve heard some rheumatologists don’t seem to know as much about PMR as some of the great folk on this Forum)! Good luck!

[tangocharlie in reply to Pixix]

Sounds like a great GP, stick with him!

[Pixix in reply to tangocharlie]

Oh, yes...but I do realise how lucky I am, & don’t take it for granted, for sure!

[kalimche]

Hi Arflane - I was pleased to read your history as it is similar to mine, and I had begun to get worried that I was tapering too quickly. I was diagnosed with PMR last Oct and started at 15 mg of Pred. I saw the Rheumy after 6 weeks and she told me to start tapering so went down to 12.5 for 4 weeks, then 11 for 4 weeks, then 10 for 4 weeks. After that I dropped .50 mg every 2 weeks (or 1 mg a month) sometimes hanging there for an extra week if I had some neck pain (never very bad - especially not compared to initial pain). In June I began Dorset Lady's 5 weeks taper plan from 7 - 6, and am on the last week of tapering from 6 - 5 mg. Talking to a gp about something else, she said she wanted me to stay at 5 mg "for at least 12 weeks". (rather an unusual statement it would appear!)

Apart from the aforementioned slight neck ache, I never felt any other recurrence of symptoms. But a couple of weeks ago I moved awkwardly (to avoid the cat!) and hurt my knee - so bad that the next morning it was very swollen and I could not weight bear on it at all. It slowly improved each day until after 5 days I went to A&E - the doctor reckoned that I had strained my knee ligament. He said I probably felt it improving daily because the steroids would have been helping with the inflammation. Swelling has now gone, and I am planning to try and start going for a walk again.

But I have begun to wonder whether the ligament pain could be down to the PMR - or is it a side effect of the steriods?

I had certainly intended from here on to drop following same taper plan but by .50 mg at a time - but am now considering sticking at 5 mg for the time being.

[TheMoaningViolet]

Hi Devonshire, I started on 15mg at the beginning of December 2019 and am now on 5.5mg. I am sure this is not the fastest reduction anyone has ever achieved, but I am on a relatively small dose of steroids and I am feeling good.

I try to be thoughtful about tapering, taking into consideration how I feel about it both in terms of being ready and feeling no pain and I give myself time to stabilise on a new dose and feel completely confident that I am feeling no worse than at a previous level. I am reducing by 0.5 mg now using either DL or DSNS method a and this has made the tapering process immeasurably more comfortable (thank you DorsetLady and PMRpro). I have learned to recognize what my withdrawal symptoms feel like (headache and fatigue feature prominently here) and use paracetamol to gauge the nature of my discomfort. I think you need to understand the nature of yours in order to decide what your next step should be.

[Charlie1boy]

Good question. When I was diagnosed on the last day of 2014, I was told by my GP that PMR " might last for two years, could be longer, and could be chronic". I guess the replies you have had so far would confirm this.

I started at 30mg, and two years later had got to 6 mg. Today, I have got to 1 mg, with the intention of going to half mg next week.

That's just over five and a half years from the start, and research shows this is about average.

We are all different, with different metabolisms, so you may be lucky. All I do know, after all this time, is that you will needs loads of patience to get through it!

Best wishes

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

Well done that GP - do you still have him/her?

[Devonshire31 in reply to PMRpro]

Yes, I do.

[Charlie1boy in reply to PMRpro]

Unfortunately she has retired now; it probably helped that her mum had PMR!

Having said that, the whole practice I attend Leamington Spa is really "switched on" for PMR, which is a great bonus.

Best wishes

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

Ah - insider knowledge!! But one good doctor in a practice often means they pass on what they have learned - handy topic for CPE!!! One member of the forum told us her GP husband used it so his practice was also well aware.

[Charlie1boy in reply to PMRpro]

You've lost me on CPE. I googled it, but that hardly helped!

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

Continuing Professional Education - I think it is a condition of continuing registration in a healthcare field.

[Charlie1boy in reply to PMRpro]

👍😊

[Rokerman]

That seems a pretty rapid taper to me......! I’m 4.5yrs in, having started at 15mg and upped pretty soon to 20mg. I went on to Dorset Lady’s plan (sort of) and have got down to 0.5mg with a view to stopping sometime soon. My GP hasn’t even mentioned PMR the last few times I’ve seen him (!) so I’m basically doing my own thing.......😉 Listen to what your body is telling you and act accordingly

[tangocharlie]

In England GPs and even many rheumatologists usually want you tapering within 2 weeks and off steroids within 18 months regardless of what pain you're in, as most of then are still sadly clueless of how to treat PMR. The Facebook forums are full of poor people in pain because they have been misadvised by doctors.